Day +56 (2nd post)
Rylie managed not to spike a fever or pull any O2 stunts before we broke through the doors of the hospital and walked two blocks to our home away from home, the RMH. Barbara and I scrubbed our apartment from top to bottom earlier this week, but now that Rylie is here with all her paraphernalia, it looks like a tornado went through this evening. It sort of did! We rushed around to get all of Rylie's meds in her and her TPN (nutrition) set up for the night before Rylie crashed. Hopefully she gets a good night's rest before we have to be at clinic at 9:00 a.m. tomorrow. It's not too early, but we have a few chores (aka meds) to take care of before we go. Wish us luck.
Before we got Rylie hooked up for the night, she did manage to eat a little. She sat in her highchair and sucked on a cracker and then put away about three-fourths a baby jar of apple and blueberries! Holy smokes! Hopefully this is the start of a new healthy appetite for Rylie so we can stop the TPN soon.
Good night, everyone! We'll post more soon.
9 comments:
Weeehooo!! Congrats on being back to RMH and all together as a family again. And, Gooo Rylie on the good food too! Little steps in the right direction. Really, they're quite big steps. So happy for you. Have a great weekend!
"The Little Rylie That Could!!!"
:)
Yea! Way to go Rylie! And - applesauce and blueberries will have a special signifigance from now on!
Hope everyone sleeps great tonight!
Good luck with all the meds, etc.!
love,
Susan, Clark and Robin
That's so awesome!!! GO RILEY! So I'm confused as I don't know much about Riley's condition. But what is her lifelong prognosis? Will she have to take meds for the rest of her life?
Sorry to be a nosey one!
Yea, glad you're back at "home", and Rylie's eating! Keep it up, Rylie Strong!
Hi Joy,
We hope Rylie won't have to be on meds forever. They'll start tapering off around day +100. By one year post-transplant, Rylie could be off EVERYTHING. Hurlers is not "cured" with a transplant, so we realize there may be other issues, such as orthopedic problems, but she is not doomed to a life of nasty meds! Yea!
Hi. Picturing you finishing your chores (Rylie's meds!) and strapping in for the stroller ride to the Clinic this morning. Sure hope you got some good rest last night. We were OVERJOYED! to hear Lyle's message on our phone when we returned from Wichita and our nice dinner with G'pa Wendell, Mary, and the Ensz last evening. It was good to be with you this past week. Yes, Larry "cruise-controlled" through his birthday as we drove back to McPherson on Tuesday! With "a little song a singin' in our hearts" this morning, and love and prayers, L&B
I knew as soon as I read the title that it was going to be good news..thank God and know we are with you every day. Gary and Deb
Gotta love those apples and blueberries! Can't wait to have her home for some BBQ soon! :) Go Rylie!!
Thinking of you...
we're glad to hear she's eating the good stuff, congrats on your break from the hospital!!!
love, the messinas
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